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Bio Med CentralOpen Access Case report Aggressive juvenile fibromatosis of the paranasal sinuses: case report and brief review Shaheen E Lakhan*1, Robert M Eager2 and Lindsey Harle2 Add

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Bio Med Central

Open Access

Case report

Aggressive juvenile fibromatosis of the paranasal sinuses: case

report and brief review

Shaheen E Lakhan*1, Robert M Eager2 and Lindsey Harle2

Address: 1 Executive Director, Global Neuroscience Initiative Foundation, Los Angeles, CA, USA and 2 Research Consultant, Department of

Biomedical Sciences, Global Neuroscience Initiative Foundation, Los Angeles, CA, USA

Email: Shaheen E Lakhan* - slakhan@gnif.org; Robert M Eager - rmeager@gnif.org; Lindsey Harle - lharle@gnif.org

* Corresponding author

Abstract

Desmoid fibromatoses are benign, slow growing fibroblastic neoplasms, arising from

musculoaponeurotic stromal elements Desmoids are characterized by local invasion, with a high

rate of local recurrence and a tendency to destroy adjacent structures and organs Desmoid

fibromatoses are rare in children, and though they may occur in the head and neck region, are

extremely rare in the paranasal sinuses Here we report a case of extraabdominal desmoid

fibromatosis in a seven-year-old boy involving the sphenoid sinus, one of only six published reports

of desmoid fibromatosis of the paranasal sinuses The expansile soft tissue mass eroded the walls

of the sphenoid sinus as well as the posterior ethmoid air cells extending cephalad through the base

of the skull We discuss the clinicopathologic features of this lesion, including structural and

ultrastructural characteristics, and we review the literature regarding treatment and outcome

Background

Desmoid tumors arise from musculoaponeurotic stromal

elements and are locally invasive, deep-seated fibrotic

tumors They are destructive of surrounding tissue, with a

high rate of recurrence, but are not known to have the

capacity to metastasize Desmoid tumors have two

gen-eral classifications, intraabdominal and extraabdominal

This distinction is significant in determining proper

clini-cal management Extraabdominal tumors are

predomi-nantly sporadic, and often can be effectively treated with

local resection; systemic treatment is generally reserved

for refractory tumors Conversely, intraabdominal

desmoid fibromatosis, for example those seen with

famil-ial adenomatous polyposis and Gardner syndrome, are

often diffusely infiltrative and surgically unresectable;

sys-temic therapy is considered first-line treatment of

intraab-dominal desmoids Extraabintraab-dominal tumors in the

paranasal sinus are extremely rare; to the best of our

knowledge only six cases have been reported in the litera-ture [1-6] (Table 1)

Case presentation

An otherwise healthy seven-year-old male presented with

a six month history of chronic sinus congestion and hali-tosis He was initially treated for atopy and bacterial sinusitis with no resolution of symptoms Suspicion was raised of a foreign body in the nose and ENT consultation was ordered Prior to endoscopic removal of the foreign body, computed tomography (CT) of the head was per-formed

CT revealed a large expansile mass, 4 cm in greatest dimension, expanding and eroding the walls of the sphe-noid sinus and the posterior ethmoid air cells Because the mass extended cephalad into the base of the skull, mag-netic resonance imaging (MRI) was performed MRI

Published: 28 May 2008

Journal of Hematology & Oncology 2008, 1:3 doi:10.1186/1756-8722-1-3

Received: 23 April 2008 Accepted: 28 May 2008 This article is available from: http://www.jhoonline.org/content/1/1/3

© 2008 Lakhan et al; licensee BioMed Central Ltd

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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found no evidence of meningeal involvement or brain

parenchymal invasion and the major intracranial arteries

appeared intact The right optic nerve was displaced but

without evidence of impingement

The patient underwent functional endoscopic sinus

sur-gery with biopsy of the lesion Histological analysis

revealed a cellular myofibroblastic neoplasm suggestive of

extraabdominal desmoid fibromatosis (Figures 1, 2)

Sur-gical resection was performed and histoloSur-gical analysis

confirmed the diagnosis Surgical margins were positive

Because of the rarity of this tumor, particularly in the

para-nasal sinuses of a child, immunohistochemical

examina-tion was performed The tumor showed focal positivity for

SMA and multifocal nuclear positivity for beta catenin;

desmin, S-100, and CD34 were negative

Discussion

Desmoid tumors are rare, accounting for approximately

0.03% of all neoplasms, and less than 3% of all soft tissue

tumors The estimated incidence in the general

popula-tion is 2-4/1,000,000/year, which in the US translates to

approximately 900 new tumors annually [7] Individuals

between the ages of 15 and 60 are most often affected;

desmoid tumors are rare in the young and in the elderly

They are slightly more common in women than in men

[8,9], and there is no significant racial or ethnic

distribu-tion Desmoids tend to be large bulky tumors that locally

infiltrate adjacent tissue structures Histologically, they are

characterized by small bundles of spindle cells in an

abun-dant fibrous stroma The fibroblasts have a propensity to

concentrate at the periphery of the lesion, and the

cellular-ity is low There are usually few mitotic figures and

necro-sis is absent The etiology of desmoid tumors is unknown

However, the identification of clonal chromosomal

changes in a significant fraction of cases supports the

neo-plastic nature of these tumors [10], and emerging

evi-dence implicates dysregulated wound healing in the

pathogenesis of these and other fibroblastic lesions

Tri-somy 8 and 20 as nonrandom clonal chromosomal changes, particularly trisomy 8, occur in at least 30% of sporadic desmoid tumors [11-14] Although the clinical relevance of these genetic abnormalities is unclear, these genetic insults appear to be associated with a higher risk

of recurrence [12]

Treatment

Because of their locally infiltrative nature, desmoid tumors are traditionally treated by local resection with wide surgical margins when significant morbidity can be avoided [15,16] Considering the potential toxicity and morbidity associated with local and systemic therapy in children, complete surgical excision is the treatment of choice for aggressive juvenile fibromatosis Because these are benign tumors with a high rate of recurrence, surgeons must balance the need to obtain tumor-free margins while

at the same time using function-preserving approaches to minimize major functional and cosmetic sequelae The available data are conflicting with regard to the impor-tance of complete resection Buitendijk et al [17] reported that, of 187 published cases of juvenile fibromatosis, the single greatest determinant of tumor recurrence was incomplete resection In another evaluation of 63 pediat-ric patients, the only factor associated with an increased rate of recurrence-free survival was negative surgical mar-gins (70% versus 15% with positive marmar-gins) [18] In con-trast, several authors report that the risk of recurrence is independent of margin status [19-25] In one of the larg-est series of 203 patients undergoing surgery for either pri-mary or recurrent desmoid tumors, margins were microscopically positive in 57 and negative in 146 [21]

As expected, the disease-free survival rate was significantly better in patients with primary disease (76% versus 59%

at 10 years), but it was not significantly worse for those with microscopically positive versus negative margins at primary surgery (five year disease-free survival rate for those with positive and negative margins, 79% versus 82%; at 10 years, 74% versus 77%) In patients who

Table 1: Reported cases of pediatric desmoid fibromatosis of the paranasal sinuses.

2 year old male Right maxillary

sinus

Nasal obstruction Aggressive

fibromatosis

Surgical resection Lost to follow up [1]

14 year old female Right parotid/

mandible

Right facial deformity

Aggressive fibromatosis

Surgical resection (positive margins)

No recurrence at <

1 year

[6]

15 month old male Nasal cavity/

anterior maxilla

Facial deformity Aggressive

fibromatosis

1 Surgical resection (positive margins) 2

Surgical resection (negative margins)

Recurrence in 1 month, no recurrence

[5]

2 year old male Left maxillary sinus Nasal deformity Desmoid

fibromatosis

Surgical resection (twice), followed by adjuvant tamoxifen

No recurrence at 2 years

[4]

Conley et al [2] reported a series of 40 different cases, three cases between the ages 1–10 One of these cases involved the ethmoid sinus.

Fu [3] reported two cases of juvenile fibromatosis ages 2 and 10 One of these cases involved the maxillary sinus.

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undergo aggressive resection with wide margins

recur-rence rates remain at 23% to 39% [15,26-29] When they

recur, salvage therapy with radiation therapy (RT) and/or

repeat excision is often successful This data cast some

doubt on the current dogma of aggressive pursuit of

neg-ative surgical margins in cases that may result in excessive

morbidity [9,19] The uncertainty as to the importance of

positive resection margins also spurs controversy with

regard to the role of postoperative RT for patients with

incompletely resected disease

Radiation therapy

In patients for whom surgery is not an option, primary RT

is an effective alternative therapeutic course In several

reports, RT alone (50 to 60 Gy) or combined with surgery

in patients with positive resection margins achieves

long-term control in approximately 70% to 80% of patients

with desmoids [23,25,27,29-31] The volume of disease

does not appear to affect the probability of local control

Local recurrence rates do not appear to correlate with the

use of higher doses In one study of 23 patients the relapse

rate at five years was 31%, and radiation doses above 56

Gy did not improve outcome In fact, higher dose levels

were associated with more complications: 30% (high

dose) versus 5% (low doses) at 15 years [23] Adverse

events included the following: soft tissue necrosis, bone

fracture, radiation enteritis, peripheral neuropathy,

edema with cellulitis, limb shortening, and bone

hypo-plasia Positive resection margins were not a prognostic

factor in this report

Systemic Therapy

Patients with extraabdominal desmoids and multiple locoregional recurrences despite adequate surgical and/or radiation treatment are generally considered for systemic therapy Other indications for systemic therapy include unresectable tumors and intraabdominal desmoids In these settings, early and aggressive systemic therapy is important to avoid life-threatening complications A vari-ety of agents are active, including noncytotoxic therapy (i.e non-steroidal anti-inflammatory drugs (NSAIDs), hormone manipulation, and pirfenidone) and cytotoxic chemotherapy The conclusions that can be drawn as to the relative effectiveness of these agents in the treatment

of desmoid tumors are limited by the low incidence Unfortunately the majority of data generated on this topic consists of case reports Therefore, in the absence of clear evidence, a conservative approach is appropriate In cases where there is no impending threat to life or function it is reasonable to begin with less toxic approaches, such as hormone therapy or NSAIDs Cytotoxic chemotherapy is

a more appropriate choice for patients with rapidly grow-ing tumors or those who are highly symptomatic

Noncytotoxic systemic therapy

Clinical and experimental evidence suggest the hormone dependency of desmoid growth Clinical benefit is reported in nearly 50% of patients with tamoxifen treat-ment, with most of the objective responses being partial rather than complete Tumors are slow to manifest an actual reduction in size, and not infrequently, shrinkage lags behind discontinuation of therapy by months or even years Response durations vary to a great degree, ranging from seven months to 12 years [32] The mechanism is unclear since response to treatment does not appear to correlate with the presence of estrogen receptor alpha

Paranasal tumor, H&E stained section, high power (40×)

Figure 2

Paranasal tumor, H&E stained section, high power (40×)

Paranasal tumor, H&E stained section, low power (10×)

Figure 1

Paranasal tumor, H&E stained section, low power

(10×) The section shows a spindle cell neoplasm with

taper-ing nuclei, eosinophilic cytoplasm and minimal atypia Focally,

myxoid features predominated

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[9,33], and the significant lag of the therapeutic response

has led some to hypothesis that the mechanism of action

is estrogen independent [46] There are also documented

responses to NSAIDs, most often sulindac, both alone and

in combination with tamoxifen [9,34-39] At least one

report documents the resolution of a desmoid tumor

being treated with indomethacin and ascorbic acid for 14

months [40] Although response rates as high as 70% are

reported with combined therapy [9], regression is usually

partial and may take many months after an initial period

of tumor enlargement In addition, response criteria for

these case reports are not standardized Several case

reports describe objective response or prolonged periods

of disease stabilization with interferon alpha (IFN-alpha)

[41-43], in some cases following failure of sulindac and

tamoxifen [36,44,45] However, new data suggesting that

IFN type I signaling is a positive regulator of neoplastic

growth has raised questions about the therapeutic role of

IFN-alpha in this disease [46] An increasing number of

reports suggest clinical and radiographic benefit from the

tyrosine kinase inhibitor imatinib (Gleevec) [47,48] This

effect is presumably due to tumor expression of activated

receptor tyrosine kinases c-kit and/or platelet-derived

growth factor receptor-alpha (PDGFRA) However the

clinical efficacy of imatinib and the mechanism

underly-ing clinical benefit in the patients who have been treated

with this agent are uncertain

Cytotoxic systemic therapy

Although desmoid tumors as a group are generally slow

growing with low metastatic potential, there are several

highly active chemotherapy regimens that can potentially

produce durable response The combination of low dose

methotrexate and vinblastine has shown promising

results, particularly in children [49-52] One study of 30

patients with a median age of 27 reported 10 year

progres-sion free survival in 67% [49] Liposomal doxorubicin has

proven to be a well tolerated and efficacious option [53]

High dose doxorubicin or ifosfamide-based regimens

have shown more activity and increased incidence of

seri-ous toxicity; thus they are usually reserved for cases that

are life threatening and refractory to other treatments

[54-57]

Conclusion

Desmoid fibromatosis are rare pediatric tumors, and the

case reported here is one of only six published accounts of

pediatric desmoid fibromatosis of the paranasal sinuses

Aggressive juvenile fibromatoses are a group of lesions

with variable response to treatment; they are locally

aggressive but have low metastatic potential Current

treatment ranges from traditional surgical resection to

multidisciplinary approaches involving local radiation

and/or systemic cytotoxic and cytostatic agents However,

surgical resection with wide margins remains the primary

treatment for extraabdominal fibromatoses Reports in the literature are conflicting as to the importance of obtaining tumor-free surgical margins; some retrospective analyses have found a significant decrease in recurrence rate with negative margins, while others have not Based

on these reports, the optimal treatment strategy for pedi-atric desmoids fibromatoses is patient-dependent, and clinical decisions must be made based upon tumor loca-tion, risk of surgical morbidity and risk of radiation-induced damage Radiation therapy and cytotoxic chemo-therapy in pediatric patients should be used in cases that are refractory to surgery and noncytotoxic systemic ther-apy due to the potential of growth disturbance, contrac-ture, and the development of secondary malignancy

Abbreviations

CT: computed tomography; IFN-alpha: interferon alpha; MRI: magnetic resonance imaging; NSAID: non-steroidal anti-inflammatory drug; PDGFRA: platelet-derived growth factor receptor-alpha; RT: radiation therapy; SMA: smooth-muscle actin

Competing interests

The authors declare that they have no competing interests

Authors' contributions

SL, RE, and LH secured the case, conducted the literature review, and participated in the preparation of the script All authors read and approved the final manu-script

Consent

Written informed consent was obtained from the patient's parents for publication of this case report and any accom-panying images A copy of the written consent is available for review by the Editor-in-Chief of this journal

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